This is my journey and my journal... my way of dealing, coping, sharing. It just IS!
This is my latest post in my struggle to stay alive and have a few more years with loved ones.

LIVESTRONG:

What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).

So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.

I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

WARNING: Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

Monday, February 2, 2015

Who Owns The Rights?

Who owns the rights to the information gleaned from my ICD (Implantable Cardioverter Device), which is, in the simplest terms, a defibrillator and pace maker combined? Apparently I do not.

I know this only because when I see my cardiologist, and he checks (they call it "interrogates") my ICD, I do not get a copy of the report unless I specifically request it. And when I do, it is about 20 pages long, and really doesn't mean a whole lot to me. It is not written for, or to, me. It is for my doctor and the device manufacturer and their staff, in this case St. Jude. Doesn't it seem odd that something that is implanted into my chest, hooked to the inside of my heart, does not provide important life-saving, and sometimes life-enhancing, data to me. It does to me.

Shirwin Siy just recently wrote the article, "Copyright Law and My Mother's Heart" to take part in Copyright Week,
a series of actions and discussions supporting key principles that
should guide copyright policy. Every day this week, various groups are
taking on different elements of the law, and addressing what's at stake,
and what we need to do to make sure that copyright promotes creativity
and innovation.

Mr. Siy wrote the article on January 20, 2015, so I must presume that Copyright Week that week. But that doesn't really matter. What does matter is that I happened upon it on Facebook, and it spoke to me very intimately.

Hopefully, one day, this information will be owned by me, or at least available to me on a real time basis. Because then it will be really useful to me and my cardiologists and potentially life saving. Wouldn't it make much more sense for me to have a hint of when my heart is challenged and give me the opportunity to maybe do something about to prevent a shock, rather than just wait for the shock, if in fact it happens timely and does what it is meant to do -- restart my heart in a normal rhythm?

Just saying...

Life is Good...

Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

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